Aging With Cerebral Palsy
The United Cerebral Palsy Association has estimated that there are approximately 400,000 adults with cerebral palsy living in the United States (225). It is expected that this number will grow due to improvements medical care.
A number of studies have published data on the life expectancy of persons with cerebral palsy. A population-based Health Surveillance Registry in British Columbia was utilized to study a cohort of 3,189 persons with cerebral palsy born between 1952 and 1989 (226). Overall survival rate at 30 years was estimated to be at least 87%. Mental retardation and epilepsy were determined to have a negative effect on survival. The projected life expectancy of children who currently have cerebral palsy is unknown, as these surveillance studies are based on medical practices from previous decades.Musculoskeletal symptoms are commonly identified complaints in adults with CP, even at a relatively young age. Issues that are commonly identified include cervical pain, back pain, and hand paresthesias (225). Other concerns include maintenance of mobility, availability of adaptive aids, incontinence, and lack of appropriate preventative medical care (225). A large number of adults with CP do not obtain regular general health evaluations or rehabilitative care. This is largely due to the lack of adult physicians with an interest and knowledge of medical issues in persons aging with cerebral palsy and the lack of an organized system of care similar to what is currently available for children with cerebral palsy.
Information on education and employment in adults with CP is limited. Reported competitive employment rates vary from 24% (227) to 53% (228). The only population-based study took place in Europe and found 33% of young adults participated in higher education (vs 77% of controls) and 29% were competitively employed (vs 82% of controls) (229). Proposed reasons for lower education and employment rates include impaired cognition, employment policies, inadequate accessibility, attitudes towards individuals with CP in the workplace, or impaired social functioning (229).
It is clear that more attention needs to be paid to issues related to aging in cerebral palsy. Adult medical care providers need to be identified and educated, and a routine means of transitioning care needs to be in place. An early emphasis should be placed on independent living skills. Adaptive equipment needs to be routinely reassessed for its appropriateness. Adults with cerebral palsy need to be aware of the community support services available to them and learn to advocate for themselves. Active vocational counseling should begin in high school. Hopefully, the growing awareness of this population will lead to improved quality of life and increased functional independence.